1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

symptoms or side effects?

Posted , 10 users are following.

Susanne_M_UK
Susanne_M_UK

I posted my details on the fixed thread, but just to recap, have had PMR for 5 years and was down to 5mg Pred daily. I was then just before Christmas diagnosed with GCA and am currently on 40mg.

I'm feeling very shaky, weak, slightly removed from the world and with awful night sweats, - I'm having to change my nightie 3 times a night!

My question is, - is this caused by the level of Preds or is it a symptom of GCA?

1 like, 66 replies

66 Replies

Prev Next
  • Susanne_M_UK
    Susanne_M_UK

    Posted

    I spoke to GP today and asked her to sign me off for half day working, but she decided to sign me off completely for the week and look at part time next week. I'm relieved really, as I found yesterday at work very hard even though I was only there for the morning.

    It will give me a chance to rest and see what consultant says on Thursday.

    • MrsO-UK_Surrey
      MrsO-UK_Surrey Susanne_M_UK

      Posted

      Very wise, Susanne - now you can just relax and give yourself all the TLC you deserve and need.
    • EileenH
      EileenH Susanne_M_UK

      Posted

      Excellent - that is a good start. Believe me, it may come as a bit of a dent to your ego - but noone is indispensible! ;-) 

      Being off now may mean you are off less in total - you struggling to cope is not good for you or for your employer in the long run.

      Now REST!

    • pat38625
      pat38625 Susanne_M_UK

      Posted

      So glad you got sorted.  Just enjoy your time off and like the others said "Rest, rest, and more rest.  You will benefit in the long run.

      Pat

  • Susanne_M_UK
    Susanne_M_UK

    Posted

    Got the book today. Am disappointed that the book does not mention all the GCA symptoms. It is very sparse in the GCA part and I'm having to print off other symptom of GCA from the web. Not what I expected.

    • EileenH
      EileenH Susanne_M_UK

      Posted

      Kate only had PMR and it is her story - it is not a medical treatise, it is a story of how she survived it. It has her experiences so GCA doesn't get much of a mention.

      If you want medical details then the support sites are more suitable sources, particularly the PMRGCAUK northeast of England support site which has medically checked and approved articles and links. 

    • Susanne_M_UK
      Susanne_M_UK EileenH

      Posted

      I did register for North East site but am still waiting for approval to join the forum,  about 4 days. 

      I'm not worried, just wanted some detailed facts about the symptoms before I see consultant tomorrow. Having found both consultant and GP initially not very aware of GCA,   I wanted to go armed with facts tomorrow,  but did not find that in the book. 

    • tina-uk_cwall
      tina-uk_cwall Susanne_M_UK

      Posted

      Hi Susanne, yeah me too. I registered over a week ago, had the email comfirming receipt of my registration but nothing since? Christina 
    • EileenH
      EileenH tina-uk_cwall

      Posted

      One of the administrators is sunning herself on her Spanish winter trip with her camper so her internet access is a bit dodgy and the other hasn't been well. 

      Susanne - if you want detailed info you won't get any more on the forum than I can offer here but the northest support site is there to use without being a member. 

      If you have specific questions I will answer them for you as far as it is possible (or as likely as you would get from most consultants!)

  • Susanne_M_UK
    Susanne_M_UK

    Posted

    I saw my consultant today who confirmed GCA no doubt. He asked whether I'd had appointment to have biopsy. I was not aware of an appointment, but he seems to think my appointment with eye clinic tomorrow is a biopsy. I'm not sure that's correct according to my letter from eye clinic.

    If so, my GO ha forgotten to get me a biopsy.

    • Susanne_M_UK
      Susanne_M_UK

      Posted

      He was concerned that my GP had not booked the biopsy. It's now almost too late.
    • tina-uk_cwall
      tina-uk_cwall Susanne_M_UK

      Posted

      Hello Susanne, sorry that you have now developed GCA, what a bummer! To come so far and for this to happen! But you do know that like PMR it is treatable and as you know Mrs o has been there, worn the t shirt and come out the other end. Yes speak with your GP re the biopsy if tomorrow proves to be nothing more than an eye check up. Good luck, christina 
    • MrsO-UK_Surrey
      MrsO-UK_Surrey Susanne_M_UK

      Posted

      Susanne, the BSR Guidelines state  that the temporal artery biopsy should be performed preferably within one week of starting steroids, but that it may remain positive for 2-6 weeks after commencing steroids.  So if tomorrow's appointment is for biopsy, then you could still be in the suggested time frame if you only started the steroids just before Christmas.  However, do bear in mind that the biopsy is not always reliable as the large cells they are looking for can sometimes escape the tiny portion of artery removed.  Although I was seen by my wonderful rheumatoligst in Chertsey within about 10 days of starting steroids, he didn't suggest a biopsy.  He was obviously 100% certain of the GCA diagnosis in view of my classic symptoms.  Good luck tomorrow.
    • Susanne_M_UK
      Susanne_M_UK MrsO-UK_Surrey

      Posted

      It's very confusing. I'm going to the Sutton eye clinic tomorrow and my consultant thinks this is for the biopsy. Yet my letter just states eye clinic. The consultant rang my surgery while I was there to find out if there was a referral and it was invonclusive.not knowing what the referral was for. My GP never told me I would have a biopsy, but rather that I would gave my eyes tested. She made a point of saying I would have my eyes tested.

      so all in all, I have no idea what will happen to morrow. My consultant is aware that the biopsies is now way overdue.

    • EileenH
      EileenH Susanne_M_UK

      Posted

      Personally, I'd be surprised if a GP could request a biopsy - well, he could request but I suspect it might be denied without specialist back up. 

      The biopsy is useful for later - once all your symptoms have resolved and some idiot decides it wasn't GCA because they didn't see you and wants you to discontinue pred. Having a positive biopsy is the only 100% proof - but it is only positive in about 40% of cases anyway, even done in the first couple of weeks. If your consultant is convinced it is GCA then it shouldn't make any difference to how he treats you. 

      Good luck at the climic.

Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.